GRRRRRRRRR I HATE LE..........
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Brazos, good grief!
I'm so sorry for everything hitting the fan like that.Yup, travel makes things worse, for me too. Make sure she teaches you to wrap your own arm so you have that "tool" in your own toolbox and don't have to keep the therapist in your pocket.
I also take my gloves off to eat, with this caveat: put them somewhere safe! In your purse or your pocket. It's tempting to lay them in your lap, where I've accidentally used them as a napkin, and once dropped them under the table at a restaurant and forgot about them until I was out in the car -- when I got back in they'd already seated new people at the table and I had to ask them to move and grovel around to pick up my gloves.
Same thing with using the outhouse. Even MORE important to put them somewhere safe, because it's entirely possible to flush one.
Here's some information about hygiene when wearing gloves:
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#GLOVES_AND_HYGIENECheck out the JoviPak website -- those new axillary swell pads Kira mentioned are 10% off for Pink Stupid October.
Hope some of that helps. Hang in there!
Tell us how we can help. Big hugs,
Binney0 -
I have used the disposable gloves to cover my gauntlet while I am cooking to keep it clean and dry. About using the 'outhouse', I have already pushed my glove/gauntlet into my pocket, washed and dried my hands, walked out without putting it back on since my swelling isn't that bad and forget where I put it. Look for it and can't find it until I wash the clothes I had on that day. (I still can't find one that I lost 3 weeks ago) I reverted to the one I got last year and it was time to order again so I ordered two more last week just so I don't loose it again.
Sheila
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This won't work with gloves, but with my gauntlet, I just slip my thumb out and flip the thing back over my wrist when using the "outhouse." For cooking I wear a disposable glove over my gauntlet, and wash my hands how I normally would during cooking, washing the disposable glove, too. I usually use the disposable glove until it gets a hole in it. When I peel it off, it's inside out, so I blow into it to get all the fingers turned right side out again.
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BIg Grrrrr today. I have a fever, feel like crap, have felt bad since yesterday. My skin hurts all over my body, I just keep climbing in and out of the tub. I am not concerned this is cellulitis - there seems to be nothing going on in my arm or chest - I am just SICK. And examining my arm anxiously when I'm awake to see it's going to swell up because I can't imagine putting on the sleeve today.
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sorry outfield! I have a grrrrr today too. I fell in the shower yesterday ... landed on my left shoulder. That's my LE arm. I immediately turned the water to cold. Got out of the shower and put ice on it and took some advil. My arm didn't swell but it sure did hurt. The pain in my arm is better which I'm happy about it ... my shoulder is scraped and turning black and blue. What am I, 80?
I'm just hoping that it doesn't aggravate my LE further! grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr! 0 -
Hello everyone, have been following this thread on/off, would love your advice. I was lucky enought to go to a therapist to have a base measurement for my arms, to monitor LE. No LE apparent, had lumpectomy SNB last oct 22. Have had chemo, and finished rads end of April, and every once in awhile I feel tightness in my elbow area, forearm crease area, every since rads. I had 2 nodes removed, neg. My therapist did give me exercises to do to keep the fluids moving, and what to avoid, as well as suggesting I get fitted for a sleeve for traveling, or starting an exercise program, she wasn't too keen on weights or repititious exercises, was very in favor of walking, swimming. even suggested the sleeve for a 4 hour trip. and to make stops to walk around, and to do some sort of exercise each hour in my car.
I just had my arms remeasured and the left arm ( BC side) is still slightly smaller than the right. measurements remain the same. I have however actually got the left hand, dominate hand, that was slightly bigger to be the same size now as the right. , what do you think? wear the sleeve, don't wear the sleeve? weights? no weights? She said she has seen many of us after spring/fall cleaning even after years of being OK, come in due to washing windows because of the repetitive movements...Not washing windows this fall!!! Any advice, prevention ideas are welcome.
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msjag - Do I undersand correctly that your left hand (dominant hand) is now slightly larger than your right? If so WEAR THE SLEEVES & THE GLOVES! Wearing the sleeve alone will make the swelling worse in the hand. My dominant and my LE hand is my left & I primarily have the swelling in my fingers. I wear a glove and sleeve a lot (grocery shopping, driving, working out which includes cardio and lifting weights, basically anytime where I'm going to be reaching/lifting or stretching).
As of yet, I do not have noticeable swelling in my arm but I do have the fullness and achey feeling. My LE therapist recommended the lightest compression sleeve and level 1 compression for my gloves. Be sure you drink lots of water too. xo
outfield - I didn't say it earlier but I thought it ... I hope you feel better soon! xo
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Dawne, I hope everything's fine and the fall doesn't aggravate your LE. What a pain!
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Dawne,...I think I typed faster than I was thinking!! My left side (bc, snb side) is still smaller than my right side..same measurements as taken as a baseline. My left hand (i'm left handed) was orginally a slight bit bigger on initial measurements, but is now the same size, so I'm thinking I've actually made that smaller through exercise. So I am wondering if I should wear the sleeve for exercising even if no lympedema yet. will that do anything negative?
Hope you ok, and healing quickly. Thanks so much for helping me!!
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msjag, there's no hard and fast rule--the bottom line is that you don't have LE, and saw a great therapist who had you adopt preventive measures, including compression garments, and warned you about possible triggers for LE.
Without LE, you can likely skip the sleeve--but keep an eye on your arm--actually watch for symptoms: aching, heaviness, fullness--they tend to precede swelling.
Many therapists don't want their patients wearing compression if they don't have LE, but there was a great study a couple of years ago, where women were monitored in the post-op (vulnerable especially) period--and if their arms increased by 3% in volume, they were put in sleeves, and most women were able to stop the sleeves after 4 weeks, and had no further swelling.
It was done by Nicole Stout PT.
So, you are well informed, have the gear, and can proceed with awareness of the arm, and caution with certain movements and resistance training.
Hope that helps.
Outfield: feel better!! It sounds horrible, and I hope you're in bed with some tea and just resting.
Dawn: I fell and broke my hand last year--this kind of stuff happens--does make us feel stupid and frail. Hope you're healing quickly.
Kira
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Hi Everyone
Thanks for getting back to me re the Way of Gauntlet...and a heads up on how to not looossee them...
I was told my right arm is 17% larger than my left when re- started LE/ PT 2 weeks ago. Still not sure where I am falling Between Level 1-2.
my right arm is 4.5cm bigger than my left tonight. How does this all sound?
I have Le/pt 3 x this week.
Wearing heat gear compression underarmor... and sleeve and glove alllllll dayyyy.
Stretching/ watching salt/ drinking lots/ taking breaks and elevating me arms/ trying to remember to abd breathe...and 2 sets of lite weights 1x about 4/ week. Totally am having to slack off on any heavy work around the house/ yard.
This is scary. This has my head space in a really weird place... just another walk thru grief and I would like to just pass on this entire experience.
Kudos to all you Ggggrrrrrrr Troopers!
Hope you are all hanging tight and keeping your chins up.
gnite
brazos
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Brazos, I am very new to this. Only just told by my NP last week that I had LE and have appointment on Thursday with an LE therapist. But I had an appointment before surgery because I already had tightness in my arm and she said I had cording and took measurements all up both my arms to have a baseline to compare too. I was 5% larger in the right (dominant and also the cancer side). She said that between 4 to 7% larger in your dominant side was normal. Hope this helps.
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Brazos, I'm not understanding. You're going in three times a week, but she's not wrapping your arm? Wrapping is the only way to get the swelling out of there. The MLD helps, kind of kick-starts the process, but the real work of reducing the swelling is done by bandages "pumping" with the muscles to get that slug of a lymph system moving. Everything else you're doing (stretching, deep breathing, hydrating, elevating) can help, but it's not therapy. No wrapping?
Hugs,
Binney0 -
Thank you kay1963 I will remember to add that in to the 17% as this is on my dominant side.
Binney, I go in to LE/Pt today.... will ask about the wrapping. Getting scar release,have severe scarring akin to Rads but not as bad....( did not have Rads so go figger on that? ) some MLD...she seems to be wanting me in compression sleeve/gauntlet/ underarmour all day... and measured me for a custom compression vest with arms going half down....goes down to my waist...with the option of adding padding in my pits.
I have no swelling in my lower arm or hands... just upper arm/ pecs/pits and sides of my ribs. But that seems to be improved and I am having less pain.
If you think of anything else I should ask about toss it my way.
And as always thank you for your Guidance and for being There
Hugs
brazos
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Brazos,
It is another walk through grief, isn't it? I'm sorry you're having to deal with lymphedema. I am still feeling pretty sick and not up to reading everything recently posted, but have you tried kinesiotaping for the truncal edema? My impression is it's kind of a second-line treatment in general, but it does help me when my chest flares. There are some other women who use it who have posted. I see you've had a BMX without reconstruction (me too), and my impression from what's been said in this forum before is that the tape is much easier to apply to a flat chest. I put my compression stuff right over it.
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i got a stretch "thingy" thats made to put ice on your shoulder from walgreens.. and it works great for me. i also"go flat" just wrap it around, and it contains the truncal.. when its really bad, i use tape, but this is much easier for daily use. just wrap, velcro closed, and goo....... maybe that'll help.. my right hand is always the dealbreaker for me.. and gloves are so hard to fit.. im thankful for the one set i have.. gonna get a new fitter, and 2 sets made soon.. hoping we miss the rollercoaster ride, this time.. i
wish they would change the law herein Fla.; and let the le therapists fit, and order them another grrrrrr tonight....3jays
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((Binney))
Back from LE/Pt and was remeasured and I am out of trouble. My measurements were not the same as I was not measuring at the same spots on each arm..... And my arm volumes are just about the same. I will ask her about the tape. Did my first MLD lesson upon myself. Yey for no chest/ pit/ trunck fullness or pain.
((Outfield))
Hope you are feeling better and on the mend. Totally agree that this is a whole nother GRIEF...its like gettin hit with another diagnosis AND of being a breast cancer poster bee-atch... plus how your world is shrunk down even further. I have the keniso tape on the 2 dog ears at the center of my chest only. Makes that area much less sensitve and the swelling is down. I cant imagine wrapping around my entire chest?
((3Jaysmom))
Thanks for your thoughts too...I agree that the LE/Pt does a better job of fitting for our gear than doe the Fitters... hope your hand is doing ok.
Thank you all for being here for me, you really help my Sanity.
I have my first purple paisley LymphaDiva sleeve...I rather like it. Need to start the collection and get more esp to get grotty in.
xo
brazos
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Oh boy, had another idiot say something stupid to me today ................A so called friend called to check in with me.........................asked how I was doing........on the Femara, and other things in general...................I said I was good, and moving along..................I said the ony thing is the Lymphedema, and that is rough................................she said "Really, how come, that's just some fluid, isn't it, and a little swelling".
My answer was..................."hey I'll have to get back to you, someone is at the door"...........end of her, and her idiot questions...............I'm tired explaining to these freaks...................oh well.................I guess what doesn't kill you will make you stronger........
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duckyb1 - I don't handle it well at all when people make comments like that! I only have one friend who really gets it and she was weepy tonight telling me that she had no idea what we go through ... the massaging, the garments, the having to watch what we eat, etc., ... all the crap that you all know so well ... and I was just touched that she got it. The people who don't ... I want to throw things at them and just start yelling at them ... "Just a little swelling, well let me tell ya about this just a little swelling."
HATE IT!
I think you handled it much better than I would have. [[hugs]]
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Brazos, I don't put it all around my chest. One set of strands runs up the side of my abdomen, groin to chest, the other across from my good axilla. My LE is on one side only, but I could do it on both sides if needed.
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Brazos, wonderful! There's a trick to measuring, for sure. Much more exacting than it seems. Therapists get lots of practice, so they learn to feel how tight they're pulling it too, so they can be consistent. I find it too easy to adjust how firm I'm measuring based on what I hope to find.
"Oh, hey, look at that! No swelling at all (if I just tug this puppy really tight)!" Or, "See, I knew it! My arm is huge today (as long as the tape is extra loose.)" Also goes by my mood -- tighter when I'm nervous or frantic, looser when I'm relaxed. Completely subjective! So I just go see my therapist for a re-measure every six months, or in between if I'm having trouble. She can run the whole computer program that computes volume. Last time, when I was panicked over what I thought was a huge gain in volume she gave me the numbers and then said, "That's about as much fluid as you could spit on a dry day!" Hmmmmm....Ducky, I'm so sorry about the ignorant comments. People have a surface understanding of diabetes or epilepsy or other chronic conditions, but LE? Nada! And I get the sense it's complicated by their wanting us to be over "the whole cancer thing." Makes them feel better if we just move on. But it sure can be painful to hear, and they don't even know it.
Brownies all around!
Binney0 -
I've never measured myself. I judge how my measurements are by how I feel - my LE is in my upper arm and the more I'm swelling the bigger the "pillow under my arm" is.
Pass the brownies please.
Leah
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My therapist has me measuring myself once a week. I ordered a Precise Tape Measure from Penninsula Medical that hooks and makes it easier to measure with one hand. So far it has been fairly consistent whith what she measures except she measures in more places. Becky
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I measure if I'm not feeling "right"--not too often any more, but still, when in doubt...I used Mary/NatsFan's excel program, and it's great.
My LE therapist measures me and we have three years of data! Measuring the other arm, and noting your weight is important.
Kira
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Alright, here's my current challenge: visiting elderly parents. The last visit, my mother said nothing to me about my LE, but called my younger sister (who has not talked to me since the bc diagnosis, for whatever reason) and sobbed to her that she couldn't stand to see me in such distress.
My family has the emotional maturity of middle school girls, so my older, supportive, sister ratted her out, and I told my mother to talk to me directly, at which point she started to sob about how distressed I was. I wasn't distressed, just wrapped.
So, they're coming again, and my DH whose parents have died in the last few years, is pushing for all sorts of together time, and I know they're not getting any younger, but it's just so stressful.
My mother has always had a weird thing with illness in her children: she says, with dripping pity "I'm SO sorry." and the subtitle is "better you than me." Now, she's faced her own serious medical illnesses, but deals with them with denial.
ARGHH.
Family stuff.
I need brownies.
Kira
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Sending no calorie brownies your way Kira. My 89 yr old mother lives with me and is in total denial. I told her I had bc in January and it has never been discussed again. When I told her I had LE she just grunted. She could not tell anyone what it is or what it is called. She has never asked about the wrapping or sleeve. She did not come to the hospital for my surgery--two of my sisters and a brother came. Luckily, my six brothers and sisters have been quite supportive. I guess that is better than your mother sobbing about it. Family--can't live with them, can't live without them. I find I am more sympathetic with the elderly parents of friends than my own. Maybe we should trade parents with friends when they become elderly. I wonder why that is? Becky
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Becky, thanks! There was a TV show "Mad about You" and Paul Reiser said "Why can parents push your buttons so well?" and his wife replied "They installed them."
Years and years of history makes it hard to deal with them without all sorts of nonsense.
My DH has none of that, so he's gracious, while I'm reduced to the emotional maturity of a twelve year old...
Kira
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Hugs Kira.
I wouldn't normally ask anybody to do this but my Hospital is particapating in the Pink Glove Dance competetion and I think they did an excellent job. They are currently in first place. If your hospital is not part of this would you vote for us. Yeah I am begging for something during pinktober. lol
http://pinkglovedance.com/competition/entry-39
Thanks
I am feeling better. Hopefuly my appointment doesn't get cancelled again. I still have some swelling but not like it was. I started weight watchers this week. That should help me to stay focused on foods that are bad for me...high sodium stuff. It also helps that I just read how bad some of it was for you...processed meats. A big part of our diet since I can't stand the way fresh meat smells cooking. We are also have nice weather...80's and below. Feels wonderful.
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I watched the video and voted. It was cute! Did I see you in it?
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Thank Kay. No you did not. lol I didn't know anything about it until a friend from another state sent it to me. It is suppose to be Hospital personel only and their kids. I watche a lot of them and I have to say I think they did an excellent job.
I measured my arms last night...they are the same. I can't go by what they were the first time because I gained so much weight. I still have the ball feeling under the arm though. So It is going down. Go diet.
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